My name is Jo and I am 46. 我有开始在我的子宫,当它被发现已经扩散不治之症的癌症. 我有 2 十几岁的孩子,我是刚刚丧偶小于 3 多年前. 我的丈夫死了肠癌, when it was discovered it was incurable as it had already spread. I think it’s fair to say the last few years of my life have been tough!

 

When we were told about my husbands prognosis we felt devastated and shocked. He was a fit healthy man with no symptoms other than excessive tiredness and dramatic weight loss. No similar situation had ever happened to anyone in either of our families before and none of us knew how we were supposed to think or react or cope because we had no previous experience of death of a relatively young family member. Brian chose to fight his cancer with every type of treatment offered including one which had to come out of a special regional funding pot and a clinical trial. He refused to talk to anyone including me about how he felt emotionally or physically and held fast to the belief he would be cured. He was brave and strong and positive and cheerful throughout 99% of his illness, he pretty much ignored it whenever possible and continued in his job, which he absolutely loved, up until about three weeks before his death, through sheer determination. He was an extremely kind and proud man and was highly respected by those who knew him.

 

Whether the way he chose to deal with his cancer helped him and made things tolerable I don’t know because he never discussed that either, I sincerely hope it did, he certainly seemed at peace as I held his hand and he slipped away, 但我作为他最亲密的伴侣和照料者,我们不能谈论它事实上成了无法忍受的时候. 我没有跟他越过了他的应对方式, 每个人都是不同的,不同的东西涉及, 但它确实帮助我来决定,这不是我会选择应对方式. 它也非常有限我的​​选择, 我为未来进行规划的能力. 我当时甚至不知道他是否有足够的养老金保障看到我和孩子确定,担心钱变成了另外一个负担,我几乎对付我自己. 谢天谢地,我鼓起勇气给我的困境承认他最亲密的朋友之一和同事谁能够安慰我说,事情就OK. 这是一个巨大的安慰知道我能来管理,但我也觉得好歹我已经背叛了布赖恩, 他决不会讨论什么这么俗金钱与他的朋友.

 

另一个困境是,他会死. 我们从来没有讨论过 , 所以当时间来到我选择了他转移到 St.Gemma的 临终关怀因为尽管可爱的地区护士和我最好的朋友我对我自己几乎在这一点正如布赖恩就是这样一个注重隐私的人,并与人看到他,无论如何无行为能力感到非常不舒服. ( 我的父母有孩子在他们家尽量减少他们的痛苦,并设法保护他们一点点,也因此我可以只专注于布赖恩). 当救护车来带他去圣. 杰玛的很明显,这不是他想要的东西,他想留在家里,但我还没有做好充分计提这是可能的,只是没有时间去梳理出来. 在这一点上我没有睡超过 48 小时就死了不到 24 小时后,他被录取了圣. 杰玛的. 我总觉得我辜负了他在最后,因为他没有告诉我他的愿望我一直没能计划,所以他死的地方,他不希望. 它仍然打乱了我现在想的,但我不可能独自应对和他在他的最后几个小时中给出的最令人惊讶的亲切关怀. I sincerely hope that at the end he was only aware of the love and care bestowed on him not the location. Having experienced how amazing St Gemma’s is, I would definitely choose to die there if possible.

 

Throughout Brian’s illness I was lucky enough to find a multitude of lovely people who were prepared to talk to me about the situation, people I knew before and became closer to and people I met along the way. These people kept me going before and after and I certainly would have found things so much tougher without them. I count myself fortunate to have had such people in my life that can make a positive difference to every day. Brian surrounded himself with friends and work colleagues who had no idea just how ill he was and were happy not to ask. He certainly lived his final 18 months to the full with work, social events, holidays and new life experiences. I think he almost looked forward to chemo days with a kind of” bring it on” attitude. He absolutely packed his life full despite not talking about his illness or the future. I think he probably knew that his pension would see me and the children okay but it would have been so helpful if he’d just been able to share that with me when I asked. I suppose he also thought that he didn’t need to plan much as he knew as his wife everything would pass straight to me and that I had a job to go back to and I would be able to provide for the children’s futures. I guess he didn’t need to really worry because he knew me and the kids had a home and an income and so in one sense mine and the children’s lives would carry on the same. In some ways that was true. We were able to stay in our own home with sufficient income and so with the support of our friends we got by, however there was a huge gap in our lives to adjust to.

 

Unbelievably less than 2 years after Brian died I was faced with the chance to try out my way of coping with the prospect of death first hand too…… But this time I was also faced with practical planning for the children’s futures such as who they would live with and how money would be placed in trust for them.

 

After a number of years of painful heavy periods I finally felt a hysterectomy was my only option as the impact on my everyday life had gradually become so unacceptable I was willing to attempt to overcome my fear of hospitals. It goes without saying I wish I had done it sooner, but I had no idea that my life was in danger. I had a number of tests prior to surgery all of which seemed to suggest common benign fibroids. 我恢复得很快,从我的操作相信这是我的新改善生活的开始,并期待在参加六周check从医院被签了字. 结果回来了作为一个巨大的冲击, 一个我还没有认真预期的一个结果,然后的多么严重的事情是整个故事的MRI和CT扫描后回来.

 

我的癌症被归类为积极与可特别限制有用的治疗,因为它已经扩散. 制造巨大压力下选择治疗没有任何事先的医学知识或经验的感觉真的很难. 人们问我,在我刚刚被告知我就要死了一段时间,使用很少的信息,迅速做出决定, 它完全压倒. 到底对我来说决定是相当简单. 我研究的事实和发现,化疗只有一个在延长我的生命十个机会,所以我决定不把它. 当面对针,我得到很心疼, 扫描和医院,觉得清晰的,我不想我的最后几个月是那些事. 如果他们的赔率是有益的已经好多了,然后我可能会采取一些非常深呼吸,并与化疗了进展,但鉴于所有的事实对我个人也没有觉得值得,现在还是一个可以接受我的使用非常珍贵的时间. 每个人都是不同的,每个人都选择不同,这取决于自己的感受和优先. There’s really no right and wrong but for me this felt the appropriate choice. I haven’t regretted the decision I made. I’ve been relatively well for many months and managed to do some lovely memorable things with my friends and family. Chemo side effects may have really spoilt those opportunities. As I become more ill those memories and photos and things I bought as mementos will remain and be there to talk about.

 

In December last year ( 5 months after being diagnosed ) I was told I probably had about 3 months to live, based on how I felt and the symptoms I was experiencing. Obviously this came with a great big package of emotions for me and those around me. I decided at that point I needed to plan, talk and then live my life to the absolute limit for as long as I possibly could. I talked to a financial advisor and a solicitor, I changed my will, I looked into and chose the best ways to apportion my monetary assets. I thought long and hard about who would take my children and discussed it with them and their potential carers. It was very tough making those decisions. The children do not get on at all and so splitting them into two households felt the right decision. My son now lives with my parents and my daughter lives with my best friends and their family. I will be forever grateful to all of them for agreeing to take on my children. My female best friend has also become my main carer too despite working full time and now having three children to care for.

 

It was so hard to get my head round all this at first. Because Brian had died there was no parent figure or carer figure already in place so these things really did need to be discussed and decided upon. I’ve also been fortunate enough to be able to afford to have a carer come to me 3 mornings a week to help me shower and dress and do some cleaning jobs. My mum also helps out with my care one morning a week . Once all those things were sorted out I’ve tried very hard to not think too hard about them and concentrate on doing nice things and seeing those people who are still able to enrich my life. This may sound very harsh that I’m not willing to see absolutely everyone who wishes to see me but with increasingly limited emotional and physical strength I really have had to make some difficult decisions in order to safeguard myself from becoming overwhelmed and overburdened by those around me who although they mean well actually add to my stress and sadness.

 

Despite my sad circumstances I can honestly say I have had some truly amazing and wonderful times with friends and family and also taken up new hobbies such as painting and crafting which I had no idea I was capable of!! These have led to me being able to make some rather nice ( though I say it myself) gifts for family and friends as well as giving me some relaxing, rewarding and enjoyable new hobbies.

 

Christmas was very hard as I felt really unwell (despite being at Center Parcs with all my close family and friends) Both before and after ( including my birthday) I spent in St. Gemma’s to get my symptoms under control, which they did. I really believed I just had a couple of weeks left to live but the medical staff didn’t think I presented like I was about to die. I therefore agreed to have a CT scan which amazingly told a different story. Although things had progressed significantly they weren’t anywhere near as bad as suspected and I was told I had another few months at least!!! This came as a real shock. I had made my peace with God, written my letters, bought or made people presents,apportioned my possessions and assets, planned my funeral and wake and even said my good byes to most of my work colleagues and some of my friends and family. Adjusting to more time was so strange. I felt quite scared at first. How would I cope with having extra time when I felt really ill and what would I do with the time now I had limited mobility and stamina. I found myself asking what was the purpose of the extra time.

 

Eventually I reluctantly and hesitantly came home. With a plethora of hospital equipment and the support of my best friend and her family and a number of counsellors, church leaders and health professionals I finally felt that there was sufficient support around me to give independent living another go. I can honestly say that overall it’s been a positive bonus to have the extra time. There have been many lows but the highs have definitely outweighed them and I feel so lucky to still be here and relatively well.

 

An oncologist once said to me ” go and do everything you can and want to do. If you still have time left then do it all again”. It’s been a great mantra to live by. I have just booked to go back to Jersey for a few days in three weeks time. I never thought I would be well enough to do that again but thanks to excellent medication and a little bit of luck I am.

 

I think it’s really important to always have the next thing to look forward to. A shopping trip, coffee with an old work friend, a pottery painting session, a hair cut. St Gemma’s offer a great selection of nice things too. Art therapy, an aromatherapy massage, a chat with a counsellor, doctor or nurse and also some really practical stuff; a session with a social worker to talk to about benefits or an end of life wishes document or an occupational therapist to sort out equipment for the home. All these are completely free of charge so well worth asking about.

 

I don’t know how long I have left. I know things are progressing and I am more tired and less able than I was before. But I plan to keep to the plan. Live everyday to the full. Keep talking to those around you that are important to you and let them know how you feel, especially if you change your mind about anything. You only die once so it’s important to do it your way.

 

I don’t mean to sound as if I am trivialising dying. I really don’t want to be ill and die and leave my family and friends whom I love so dearly but this is not a choice I have. I am therefore choosing to make choices about the things that are still within my control and that feels both empowering and uplifting within a difficult and sad situation. Yes there are times when I feel so sad and fed up I’m not sure I want to go on but by aiming to follow the plan I have explained above then some of the time feels positive and useful and hopefully comforting to those who look back on it.

 

Top tips:

 

1. 把你的时间来决定什么.

这是你的生活和你的死亡. 学会说不. Don’t be pushed into things you don’t want to spend time doing because you feel obliged to or guilty. Equally if you decide to do something believe in yourself and do it wholeheartedly. Don’t let what others say put you off.

 

2. Find out the facts.

Asking questions means you can start to understand the positive and negative effects of decisions you make and hopefully make those that are right for you.

 

3. Tell those who need to know

If you make a decision about something that will be important to others because it affects you or them make sure you tell the people who need to know so there are no nasty surprises for anyone.

 

4. 计划, prioritise and apportion your time.

Do the most important stuff first. This is probably the practical things such as wills etc. closely followed by making sure you tell those you love how much they mean to you and plan to spend time with them. Do things that are fun and enjoyable and don’t do the things that make you sad or upset unless you believe the benefits are worth it.

 

5. Focus on the positives.

Despite the obvious negatives, there are generally some positives if you look hard. If there don’t appear to be any then create some new ones by meeting new people or taking up a new interest.

 

乔石, 可能 2015